It’s been a while, I attempted to get a few of the surgeons on the list to take my insurance, a few of them tried but both declined, good news is that after two years of being on SSDI you automatically get put on Medicare, so when that starts up for me in April, I will attempt again Hepworth being first on my list, so fingers crossed.
In the mean time I’m having surgery for vTOS in a few weeks time in hopes that it will relieve a few symptoms whilst I wait, I generally feel like I’m a ticking time bomb for a blood clot, with both left and right jugular vien compression and in my left shoulder, my neurologist thought having this surgery might relieve some of the issues, fingers crossed. She also put me on Diamox, which has helped allot especially with the vertigo and pressure symptoms but it took me a while to find a dosage that worked for me, the side effects suck, but have improved over time, Happy New Year everyone….
I hope that the TOS surgery goes well for you, and that it helps while you wait to see if you can be referred to Dr Hepworth…I’m UK so don’t know the US healthcare system very well; if a doctor has a long waiting list would they accept you as a patient on their list without Medicare, as he wouldn’t be seeing you until you get onto that anyway? Just thinking if you have to wait til April until you get put onto his list, & then have a fairly long wait to see him that’s really tough 
@Millymay - I agree w/ @Jules. I’d call to schedule w/ Dr. Hepworth now ie make your appt in May or June rather than waiting till April when he may no longer be accepting new patients or scheduling is pushed out to July or later.
Millymay,
I have nTOS too and had ES surgery. They are afraid to touch me because of my Ehlers Danlos. IM curious to see how the TOS surgery goes.
My daughter is set to start medicare in April too. She is on medicaid and will be considered dual eligible. I wanted to warn about how all this works. I trained as a SHIP volunteer in my state and had some bad experiences. I don’t know what state you are in.
I don’t know what state you live in. Have you checked with Hepworth office to see if he takes medicare?
I strongly encourage you to NOT sign up for a SNP / Medicare Advantage Program (MA). These are little more than HMO’s on steroids and not suitable for people with complex medical conditions.
MA programs do not travel outside your network OR out of State… I suggest you stay with Traditional Medicare and purchase a supplement. These travel from state to state with no restrictions. You state should have a supplement available for “disabled” people. I will warn they are costly. My daughters will be $300 a month. I pay $200. The value in a supplement and traditional medicare is you do not need pre-authorization for many things. I can go in and get an MRI at the drop of hat.
Use the medicare.gov tool to pick a Part D (RX plan). It is very helpful.
Many docs if they find out you are medicaid/medicare will deny you as a patient. If you say you are straight traditional medicare, they will not. If your income is low, you can likely qualify for Extra Help (RX) and Medicare Savings Program that will pay for your Part B premium rather than deduct out of your SSDI. You likely just got a letter about this from medicare. We just did. If you need any detailed info, feel free to private message me. Medicare is a complex beast.
Excellent advice @Snapple2020! Medicare, AARP, Sutter Health all push for eligible people to sign up for the Medicare Advantage Plan. I wouldn’t touch it with a ten foot pole!!
Dr. Hepworth does take traditional Medicare. I know members who’ve seen him who are on Medicare.
Oh boy I thought I had made sense of it but after reading all that I’m not sure I got the right package, I also have no idea how to private message a person on this site??
@Millymay if you want to PM someone, click on their avatar to the left of their screen name , and it’ll come up with a text box.
TOS surgery went well a few hiccups, sat still for so long I ended up with an impinged nerve in my hip, that hurt the most out of everything and an infection which is delaying my recovery a bit, but I’m off the Diamox, my eyesight has improved I’m able to stand more light, pressure headaches have eased up a bit, so all good news and the best news is I was able to book a consultation with Hepworth June 7th, Yey can’t wait, just need to make sure I have the correct health insurance first that starts in April
That’s good, very glad for you that you’re seeing some improvements after your TOS surgery! It’s a shame for the long wait with Dr Hepworth but great you’re able to see him, hope you can get the insurance sorted
That’s double great news - both that TOS surgery has helped you & that you have an appt. w/ Dr. Hepworth. I just heard today that he’s now booked till August. SHEESH he’s a busy guy!
I hope you continue to have improvement from the TOS surgery and the time till your June appt. seems to fly by. It may not feel like such a long wait since your surgery has given you improvement with some of your worst symptoms.